ENT

When Lydia was getting her ABR last month, the team that was sedating her was concerned that she might have a floppy airway (there is a technical term but I can never remember it!). They highly encouraged me to get Lydia seen by an ENT.

Our case manager got right on it and we got put on the schedule. They had told me that they wanted to do a scope on her to check things out. Since they were “scoping” her, they required a negative COVID test.

Originally, we had planned on getting her seen in the middle of February. But then we got hit with a major winter storm and had to reschedule. We had to push it back until after Mark and I got back from our anniversary trip. Luckily, my parents were able to get her COVID test taken care of (again!) while we were on our trip so we could get her seen when we got back.

The appointment was weird. I initially talked with a resident for several minutes about Lydia’s history and I could tell that the more I talked, the more concerned he became. Before he left the room, he told me he saw three potential tests or screenings for Lydia.

When he came back in with the doctor, I was prepared for a whole bunch of more testing. The doctor, however, seemed completely relaxed about everything. He explained to me what is going on in children with a “floppy airway”. He looked in her ears, nose, and mouth and then said he didn’t see anything needing immediate attention.

I was kind of shocked, to be honest. He didn’t even do the scope which was the whole reason why we had to get a COVID test. He told me that if Lydia gets another procedure scheduled where she needs to be put under, to call his office and they will basically piggy back off of that to do a bronchoscopy.

He commented that as Lydia gets more and more active, even if she did have a problem, it almost always fixes itself. In my mind I just kept thinking, “did you even read her chart?”. Because of her low muscle tone, it is unlikely (unless something changes with that), that any of her muscles would improve anytime soon. I should have said something.

As grateful as I am that Lydia doesn’t have to go through another procedure or more testing, I couldn’t help but feel a little unsatisfied. We didn’t learn anything. We didn’t come away with anything more that we came with. He basically told me that unless she begins to struggle with her breathing, we don’t have any need to worry. Ugg.

As I was driving home, from what felt like a wasted trip, I couldn’t help but think of all of the things I should have asked. I definitely felt off my game. I mean, I didn’t even ask WHY they didn’t scope her! What was I thinking? I wasn’t. I was (and still am) a little frustrated with myself.

It’s just another reminder to myself that I really am Lydia’s biggest advocate and I have to speak up. I have to ask questions. I have to go in with questions and my own plan for things that need to be resolved. So, as of right now, we still don’t know if there is anything wrong with her airway (hoping and praying there isn’t!).